How tiny breaths teach us big things

Author: Cami Bremer (Page 5 of 5)

God’s Plans

Struthers’ nurse today was asking about my medical condition/history, and I had a sobering yet heartwarming thought. For years now, I’ve quite literally owed my life to some brilliant physicians at University of Colorado. And now my son does too. Them and our Heavenly Father who has always placed us right where we were supposed to be.

So many of you have prayed for me and my health since my diagnosis of Fibromuscular Dysplasia in 2006. FMD is a vascular disease that causes aneurysm, occlusions and dissections in arterial walls. All of these are scary big words that basically mean my arterial walls are very weak and collapse, burst, or tear. I have the disease in nearly every arterial bed, but my most troublesome areas are my carotid arteries, cerebral arteries, renal arteries (to kidneys), and many of the arteries in my stomach (mesenteric, iliac, etc). Throughout the years, I’ve assembled an amazing team of coordinated physicians at my place of employment (Penrose Hospital), the University of Colorado and Cleveland Clinic. And my spectacular team only grew as we learned of our little miracle back in May.

The basics of FMD and pregnancy are this: No one knows. So for years, Eli and I have pursued any answers and professional medical opinions we could get on whether it was safe for us to pursue family in this manner. And no one could really tell us. They could outline the risks and potential problems, but none were willing to give us a solid recommendation. They were worried about the fact that a pregnancy requires up to 60% more blood flow, with increased velocity throughout the body…a scary proposition for someone with aneurysmed and torn vessels that don’t behave normally. So finally, we left the medical opinion up to God. And twice, He gave us the answer we were hoping for, one that required us to even more fully trust Him than we thought possible. And twice in a 6-month period, He took away that answer. “The Lord giveth and the Lord taketh away” suddenly had new meaning. Sobering meaning… but He had finally given some of what I had mourned–that positive pregnancy test, telling my husband and having our own little secret for weeks. So perhaps even in tragedy, He indeed gave and it was time for us to move on.

Then came time for my annual checkup with one of the world’s foremost FMD experts at Cleveland Clinic. And this time, there was little hesitation about a recommendation. You see, the two pregnancies, totaling less than 15 weeks, had not done my vascular system any good. After nearly 5 years of complete stability, the disease had progressed to a point that made pregnancy an even more scary proposition. I was told I would need another “intervention” (angioplasty) by the end of the year. So we listened, with a bittersweet relief that all things pointed to a clear answer that we weren’t supposed to build our family this way. And we filled out that adoption application that had been sitting on the desk for nearly two years.

And just about the time we began to once again “make our own plans”, we were surprised with the news that while I had been getting the medical answers I pursued, God had been pursuing His own plans, in His own timing. I still can’t believe it, but there we were, pregnant for the third time in 8 months. This time, we had nothing to do but trust wholly. And it seemed very real from the very beginning.

My team included Cleveland, Colorado Springs and University based Maternal-Fetal Medicine Specialists, Cardiologists, Interventional Radiologists, Pulmonologists, Vascular Surgeons and Neurosurgeons–and they were all communicating regularly like a well-oiled machine ready for anything. Weekly appointments were exciting for us, with more and more glimpses of our little one and hope that this little person would continue to grow healthily inside me. Three car accidents (in two weeks–that’s a whole other post!) later, we all decided this kid was a fighter and here to stay!

At 25 weeks, right after celebrating the viability point, I really began not feeling well. I’ve always monitored my blood pressure closely, and can even tell you within about 10 points where it will measure at any given point. My blood pressure was volatile, with highs and lows, and I sent an email to my Denver team (it was my “off” week with them and my Colorado Springs provider was out of the office) with my blood pressure readings and other symptoms, and they asked that I come meet them at the end of the clinic day. That was 35 days ago, and I haven’t been home since. They decided to admit me to get the blood pressure under control, and I think we all thought it would be for just a few days. Then days turned into weeks, and the twice-daily fetal monitoring and weekly ultrasounds all high-risk OB patients receive began to paint a scary picture. A picture of a child not growing and not having a normal heart rate for his gestational age. You see, when they would get my blood pressure out of stroke range and where they wanted it, our precious son suffered and didn’t have enough blood flow. This was a delicate balance for exactly 16 days, and then the scales tipped. I’ll simplify it here: instead of my body sustaining him, he began sustaining me and pumping blood back to me.

It all happened very quickly, and once again, my spectacular team was ready to roll. Within a matter of minutes of an abnormal-sounding fetal monitoring session, there was an ultrasound in my room and it was confirmed that there was too much placental resistance and that blood flow was not reaching our son. And he had fallen from the 20th percentile in size, to the 11th, to now the 3rd. So that balance we had struggled to maintain had tipped, and it became painfully obvious that he would do much better outside of me at this point.

During the time that I was a pregnant inpatient, Eli had made nearly daily trips up to visit or stay with me in Denver (about 1 hour, 15 minutes without traffic). He was trying to work and had many meetings, so we had a ‘code’ about my calling him in case of emergency. If I called him once and he didn’t answer (which he would only do in a meeting or running), I was to call again, right away, or call from an hospital-based phone number. So only a couple days after agreeing to this ‘code’, I had to put it into practice. And indeed, Eli had been running on the treadmill and answered on the 2nd call. An hour later (way too fast), he and his Dad (who had been in a meeting in Denver and was closer than Eli) walked into my empty hospital room, my bed already whisked away with me on it. I’m still so incredibly thankful that his Dad was there with him when he walked in to that empty room.  Minutes before, the physicians had asked me how far out he was, and I called and confirmed, then they whisked me away, apparently deciding that was close enough.  Nurses were waiting and ready to ‘suit him up’ and bring Eli into the delivery room, where they were preparing me for a cesarean section.  He made it…we both had tears of relief more than anything that he was there before the excitement began.  Then, in a matter of minutes, after recording a little video to our son and snapping a couple pictures, and squeezing his hand tighter than I ever thought possible, we heard a cry.  Yes, a cry!  None of us were expecting that.  Between the dire-sounding fetal monitoring that was still loudly projecting around the room and the knowledge that at 27 weeks, our son wouldn’t have developed lungs, I was wondering whether that’s what I’d really heard.  And then I heard it again.  The sweetest sound I’ve ever heard…and his name was Struthers.

“Mom”

As I got on the elevator at the Ronald McDonald House this evening, a sweet volunteer looked at me and asked if I was alright. I swallowed, smiled and nodded, afraid if I opened my mouth, I would lose it in front of this kind stranger. She explained her inquiry, “Honey, I’ve seen that look on many a mom’s face around here.” Hmm. Now that’s the first time I’ve been called a mom. Identified by an outsider as a mom. Do I look like a mom?

I don’t have a child I’m toting around. I don’t get to plan around feedings or naptimes. I don’t get to take a child home to a halfway done nursery (yet). I don’t get to dress him up in all the cute clothes, swaddle him in the blankets, or hand him the stuffed animals and other sweet comforts friends and family have bought for him. I didn’t even look like I was pregnant and was wearing normal clothes the day I delivered at 27 weeks. So, no, I don’t I don’t really feel like I’m a mom.

This perfect stranger didn’t see any of these outside signs of motherhood, but she saw my soul. She saw the heart of the mom who had been by her son’s bedside all day long. Don’t get me wrong, Struthers is still thriving, but it was just a tough day for both of us. It was a lot of little things, each of which I wished I could take away for him, but none of them overly concerning to anyone but his mom. He was breathing well on his CPAP, just working a little harder for it today. His heart was beating regularly, just a little higher rate than normal. His every 4-hour “cares” seemed to stress him out more than normal, and he practiced using those lungs and cried loud enough for us to hear it outside his isolette. I guess I know I’m a mom when I know that his breathing, heart rate, and general demeanor aren’t his norm. I guess I know I’m a mom when I sit there and wonder whether to let him “cry it out” or soothe him. I guess I know I’m a mom when I just don’t want to leave his side, and my impulse is to sing to him all night long. So there’s no doubt my heart knows I’m a mom, but there’s something about this whole NICU experience that just seems surreal. Because at the end of the day, I walk out without my kiddo.

What mom does that? Straight from the heart, but I promise I’m doing OK. Please keep us all in your prayers– Cami

Thanksgiving

We have so much to be thankful for this week! It would be easy for me to list all the things we need continued prayer for, but this week, I just want to be thankful for what God’s already given us. So…We are thankful that Struthers has survived his first 13 days of life and is thriving, now weighing 2 pounds, 2 ounces! We are thankful for providers that caught a dangerous infection super early. We are thankful that those same providers recognize the God-given ability of a mom to comfort and nourish like no medicine can and have let me hold him and continue holding, rocking and singing to him long past when we should have put him back in his isolette. We are thankful for Eli’s ability to be here when he needs to be and for his safe travels back and forth. We are thankful for my amazing employer, boss and coworkers who have been amazingly supportive through this unexpected absence from work. We are thankful that despite being exposed to several sick people this week, God protected me and I am still healthy enough to continue tending to Struthers. We are thankful that family near and far was able to be here and meet the newest family member much quicker than I would have ever imagined. We are thankful for the hundreds of people around the world praying for us, and patiently awaiting updates. We are thankful for the Ronald McDonald House and all its staff and volunteers for this home away from home. We are thankful that thus far, my body seems to be recovering quite well and that each day is a day further from the “Danger Zone” of a vascular event. We are thankful for an amazing medical team that got me through this very complex and risky pregnancy. We are thankful for the sorority sister who’s now a L&D nurse who told me three weeks ago to demand steroid injections for lung development long before I realized delivery was right around the corner. We are thankful for amazing clinical staff who go above and beyond to care for me and our child. We are thankful for the new friends “Quad Mom” and “Triplet Dad” we’ve made in the NICU. We are thankful that although my body was unable to provide what Struthers needed in the womb, it is able to provide what he needs on the outside. I could go on and on about the blessings that abound in the midst of our troubles. Thank you, Lord, for blessing us beyond measure!

Cami’s first time holding Struthers!

On November 21, exactly one week after Struthers’ birth, I finally felt like a mom and got to hold my baby in my arms. Despite all the tubes and wires, it was the sweetest moment and I wouldn’t trade it for anything.  As you can see from the video (filmed by my mom :)) at the below link, the process of getting Struthers into my arms was a complicated one, but one the AMAZING clinical staff at University of Colorado was up to.   Enjoy!

Cami’s first time holding Struthers

 

 

Prayers Answered

Struthers is doing quite well the past couple of days, and I know that it’s because God has heard all of your cries and answered them. And this time, the answer was as we would all prefer. So here’s a quick overview of the last few days:

  • Daddy got himself better and has been here all weekend for some much-needed bonding time with me AND Struthers. He’s still an absolute pro at changing tiny little diapers through two holes in an isolette. The nurses said he should teach Daddy Diapering classes!
  • Struthers turned a corner with the infection, and after only 12 hours of antibiotics, seemed to be kicking the nasty bacteria (double whammy gram-positive cocci and gram-negative rods). His original blood culture had come back within only 5 hours indicating these two infections. And only a day later, the next blood culture has yet to grow any bacteria in the last 48 hours. This is truly amazing that we caught the infection this early, and that it wasn’t as advanced as a 5-hour positive generally indicates.
  • The THIRD spinal tap was also unsuccessful, so we still don’t know if the bacteria crossed the bloodbrain barrier. But they are treating him as if it indeed did, and he’s receiving the antibiotic levels to eliminate meningitis.
  • Struthers is now OFF THE VENTILATOR! He still requires the CPAP for breathing, but this removal of the ventilator was a HUGE step forward for our little man.
  • The PDA (a small hole in the heart common in premies/newborns) closed up considerably, going from Moderate-Large and causing some respiratory distress to Small and allowing extubation in just 2 days on Indomethacine!
  • THE BEST NEWS YET: On his one-week birthday, I got to hold my sweet Struthers for the first time. I don’t think I can upload the 6-minute video to this site, but I did post it on facebook. Providers here encourage “Kangaroo Care”, which basically involves getting babies skin-to-skin with parents as soon as possible. It’s been shown to improve outcomes for preemies, and the theory behind it is that when baby is chest-to-chest with a parent, they are learning to regulate their own breathing and heartbeat by listening/feeling ours. So after holding him for about 45 minutes Friday night, I got about an hour Saturday night, and then Sunday brought a new milestone when I fell asleep (and stayed that way for two hours!) with Struthers cuddling up against me.

Apologies that this is just a brief overview, but I’ll try to write more about the emotional journey for you tomorrow. Blessed beyond measure–Cami, Eli and Struthers

The NICU Rollercoaster has begun

They told me to expect a roller coaster…but Struthers’ first 48 hours were so smooth, we all thought we had escaped the really dangerous stuff. Until yesterday, which was filled with incredible highs and incredible lows. Our strong little man endured a pic line placement, 3 spinal taps, an echo, antibiotics, IV needing replacement 3 times, ventilator settings needing increase, then weaning off, umbilical line removal, red blood cell transfusion and THREE platelet transfusions, all while fighting a nasty blood infection and trying to grow together the little hole in his heart. AND HE’S SUCH A CHAMP! He’s feisty and lets us know when he needs to be suctioned or when something’s just not right, but he’s pretty mellow and easy going too. In fact, his physicians say he’s just like his Mommy because he really should be much sicker than he’s acting. We are waiting now for the spinal tap results that will tell us whether the infection crossed the blood-brain barrier…in other words, is it meningitis now? No one thinks it’s the case right now, simply because he’s acting so well, but they’re also not counting it out because they’ve figured out that he’s stubborn like his Mommy and Daddy and just keeps doing what he knows to do.

Add to this the fact that Eli was really sick yesterday, and needed to stay away so that we can remain healthy and visiting the NICU. But my heart hurt because I just needed him yesterday. I needed both of my men to be OK.

Now for the highs…Struthers’ color looks great now, he enjoys it when they roll him on his side or tummy. Mommy’s favorite part of the day is also Struthers’ favorite part. It’s when we swab a bit of milk onto his lips and into his mouth. He’s currently getting Mommy’s milk and an electrolyte mix through a feeding tube, but they want him to develop the taste as well. So they let me swab it to him, and it’s the best thing in the world to see him open his mouth and then smack his lips very satisfied. And yesterday just hours after getting the antibiotic that will help this raging infection, he opened both eyes and looked at us long and hard for the very first time. He was so intently watching me and following my voice, and there seemed to be so much wisdom and love he was communicating with those little eyes. He has some amazing nurses and each shift begins with a little bartering over who gets Struthers today–he really is a little heartbreaker. He’s also back up to his birthweight and is on his way to being a two-pounder!

Thanks for continued prayers– Cami, Eli & Struthers

Practical Ways to Support Cami, Eli & Struthers

Originally posted on CaringBridge by Laurie Bossert

Thank you so much for all the prayers and support for this special family!!! As Cami was released from the hospital yesterday, God had already provided them a room at the Ronald McDonald House just 3 miles from NICU and where Cami will spend most of her time. Cami`s days are very full with taking care of Struthers including pumping. She would love visitors during the weekdays when Eli is needing to work. Please plan visits with Cami as she also has many doctors to interact with. Please know she will respond to texts for visits as soon as she can. Another practical way to support is gift cards for Target ( the closest store). Send all cards and gifts to their home as there are many trips between Colorado Springs and hospital.  Cami and Eli will update here as they can. They are hoping this helps each of you feel connected as we support them walking this road. As Eli has wisely said this is a marathon not a sprint. Thank you for loving this precious Bremer family!!!!!!!!

Laurie

Thanks, Laurie! Also, please be aware that we don’t have cell phone coverage or data/internet access at the Ronald McDonald House. So don’t panic if I don’t respond right away, I’m sure I’ll be back at the hospital where I can send/receive texts/email/messages soon!   —Cami Bremer, November 24, 2014

Welcome Richard “Struthers” Bremer!

Originally posted on Caring Bridge by Laurie Bossert

Praise God for the birth of Struthers! He was welcomed by his dad after being born by cesarean section at 2:03 pm. He weighed 1 lb 12.9 oz and was 13.4 inches long. He entered the world with a cry!! A sweet wonderful sound!! Cami was taken up to the Cardiac ICU so they could monitor her blood pressure. It would be a long 7 hours until she was able to see Struthers face to face. Eli, being the wonderful dad he is, did facetime with Cami so she could see Struthers through technology a little earlier!! Struthers was welcomed directly into the NICU which is where he will grow for the next 3 months – yes, expected release is his original due date, Feb 12. Eli’s parents were able to be at the hospital for the delivery and few hours after. Then Cami’s parents and sisters arrived to spend the weekend with Cami, Eli and Struthers.

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